Laughing with AIDS Patients

Between 1985 and 1990, I was a “buddy”—a helper and caretaker but not a medical care specialist—for seven gay AIDS patients, all of whom died. As I reported earlier, I volunteered because I couldn’t stand watching men die in the streets because no one would care for them. I did everything for my patients—fed them, bathed them, dressed and undressed them, took them out when they were up to it, took them to medical appointments, and, in effect, helped them die.

When you’re on such an intimate footing with people, you get to know them well. I ended up loving all my patients, even the cantankerous ones and the prima donnas. And don’t kid yourself; there are an awful lot of prima donnas among gay men.

What happened with all of them was that the imminence of death became second nature. We accepted it as a given and lived as best as we could in its shadow. We came to speak of death casually, a part of life that was inevitable. One result was that my patients and I often laughed together.

A good many of the gay men I met during my years of caring for AIDS patients showed a genius for humor. They knew intuitively what would make me laugh. And I learned what would bring a smile to their faces.

That escape into humor shows up in the pages of No-Accounts. I quote below the scene on Christmas day when Martin, the buddy, has been out shopping for Christmas dinner for Peter, the patient now permanently in a hospital bed, and Roger, his father. Peter, ever the prima donna, had told Martin he was in the mood for something cosmopolitan. He proposed south American food.

Martin breezed through the door to the apartment, his arms filled with brown bags, his muffler trailing behind him. “Mission accomplished. I feel like Scrooge visiting Bob Cratchit.”

“You look more like the ghost of Christmas past,” Peter said. “You realize how long you’ve been gone? A man could starve to death around here.”

“Peter, cut it out,” Roger said.

“Let the hell cat warble,” Martin said, all grins. “If he’s not good, we’ll crank up both ends of his bed and let him practice being the letter U.”

“You’re certainly full of yourself,” Peter said with unconvincing ill humor. “What did you get, a Chilean luau to go?”

“Better than that. An Ethiopian formal dinner for four.”

Ethiopian? That’s not South American.”

“It’s not? Never was very good at geology.”

“Geography,” Peter corrected.

“Told you I wasn’t any good at it. Anyway, the Eritrean in the restaurant assured me that it was very cosmopolitan to eat Ethiopian food on Christmas.”

When Readers Know the Ending

In two of my four novels, readers know how the story will end.

In No-Accounts, one of the two protagonists is a gay man with AIDS. It’s 1985. Readers will remember that a diagnosis of AIDS in 1985 was a death warrant. So readers expect that the story will end with the death of one of the protagonists.

In Last of the Annamese, the story begins in Saigon in November 1974. Readers know that Saigon fell to the North Vietnamese in April 1975. The ending is known at the beginning of the novel.

In my other two novels, Friendly Casualties and The Trion Syndrome, the ending of the story comes as a surprise. As a novelist, I was able to use suspense as one tool in the fictionist’s toolbox.

So do No-Accounts and Last of the Annamese work as novels? Readers tell me they do. Why?

My sense is the answer is twofold.

First, both novels do have suspense.

In No-Accounts¸ the questions are: will Peter, the gay man with AIDS, accept help from a conventional, straight, and rather slow-thinking “buddy”? Will Martin, the buddy, have the fortitude and generosity to stay with Peter to the end?

In Last of the Annamese, the question is: who will escape at the end? Will the two principal Vietnamese characters, Thanh and Tuyet, survive? Will the American characters understand that the end is at hand and flee?

But I believe that the success of all four novels springs from a different aspect: all four are literary fiction. I haven’t found a definition of literary fiction that I find satisfying. To me, literary fiction explores the human condition and how human beings cope with it. I’m deeply concerned with how we humans mate, bear our children, and face death. What values drive us? What are the priorities in human life? Can love and generosity overcome self-interest and the drive to acquire? What is courage? What is love? What is honor?

Annamese illustrates my approach in a way that is more easily explained than in my other novels. The story is told from multiple points of view. Each major character is dominated by goals and desires radically different from the others. Each has to make decisions about his or her own survival that has both costs and payoffs. To my way of thinking, each of the characters demonstrates nobility and ultimately decides with honor how to deal with the cataclysmic ending, the fall of Saigon.

I write for a number of reasons addressed at various places in this blog, but the most important is to delve into the human condition and offer the reader ways of thinking and examples of how people cope with the life we are given.

That’s why, to me, fiction is great art.

Death by AIDS

Some readers find my focus on the brutal aspects of life disturbing enough that they stop reading my work. I deliberately delineate the grisly aspects of war (Last of the Annamese, The Trion Syndrome) and detail the grim facts of death by AIDS (No-Accounts). These are features of the life I have lived, experiencing combat at the side of American soldiers and Marines and helping AIDS patients die with dignity.

In No-Accounts, I made no effort to disguise or avoid the hideous symptoms that AIDS inflicts on the human body. I show the straight “buddy” of the story, Martin, shocked and sickened as he watches Peter, the gay man afflicted with AIDS, succumb to the disease. I went through it myself as I witnessed the way that AIDS kills. I describe the body rashes, fatigue, diarrhea, ulcers, nausea, and opportunistic diseases like pneumonia as the immune system fails. Then comes Kaposi’s sarcoma, deforming red and purple lesions on the skin and within the body.

Why enumerate the ugly facts of combat and AIDS? Because I want people to know. A tiny fraction of 1 percent of Americans have faced combat; the vast majority of Americans have never seen a person with AIDS. Maybe if we’re aware at the conscious level of the gruesome consequences of war and disease, we’ll do more to move against both.

Straight Men and Gay Men

No-Accounts, my novel telling the story of a straight man caring for a gay man dying of AIDS, is told in two points of view. One is Martin, the straight, divorced, middle-aged care-giver, called a “buddy” to distinguish him from medical staff. The other is his AIDS patient, Peter, thirty-one, a handsome former dancer.

I wrote the story from both a straight and gay point of view because I wanted to contrast the worldviews.

Martin’s viewpoint was my own. I ascribed to him the blunders I made as I learned my way around the gay world taking care of men dying of AIDS. I describe him explaining to other volunteers, as I did over and over, that he’s not gay. He is, after all, the only straight buddy in the group, just as I was.

Peter’s outlook on life was much more difficult, but during the five years I cared for men dying of AIDS, I had spent so many hours talking to gay men about everything from the price of toothpaste to what might come after death that I felt that I knew how they felt.

Gay men who have read No-Accounts tell me I got it right. They are impressed that a straight man could ever grasp their perspective. I’m grateful for the insights they gave me with trust and generosity.

No-Accounts: Families

When I was taking care of AIDS patients, I watched as families reacted. Some were accepting and helpful, but too often they rejected the patient and refused to have anything to do with him.

In No-Accounts, I portrayed both reactions in a single family. Peter, the gay protagonist dying of AIDS, at first conceals both his illness and his sexual orientation from his mother and father. Then, when he’s in the hospital and close to death, they come to visit him and he tells them the truth.

His mother, an alcoholic, refuses to believe him. She is sure he’s not gay and doesn’t have AIDS. She stalks out of the hospital in high dudgeon certain that Peter is lying to her for reasons she can’t imagine.

Peter’s father takes her home but returns the next day. He’s brought candy. He tells Peter that his mother collapsed after the visit and is now under the care of the Sisters of Charity. Then . . .

Roger gave him a weak smile. “All right if I sit down?”

“Sure.”

Roger pulled a chair to the side of the bed.

“I didn’t think you’d come back,” Peter said.

Roger tightened his lips and nodded.

“Didn’t expect to see you again,” Peter said.

“Guess not.”

“I thought I might never see you again.”

Roger clasped his hands. His throat made a grating noise. Tears dripped irregularly down his cheek to his chin and dropped into his lap.

“Peter?” he said in a strangled voice, without raising his head, “I’m sorry.”

“Dad—”

“I’m sorry, I’m sorry, I’m sorry.”

Memorial Day Writers Project

I spent the bulk of yesterday, Memorial Day, joining with other veterans reading at the Memorial Day Writers Project on the National Mall in Washington, D.C. Nearly all the readers—there were a dozen or so—were veterans, and those who weren’t read pieces about veterans.

Much that I heard moved me. Readers shared stories about warriors who lost their lives defending the country.  Those who follow this blog know that I grieve over soldiers and Marines who died in combat. Yesterday I heard from former soldiers, Marines, and airmen. It was familiar material, but it still hurt to listen to.

What impressed me the most was how much military ordeals shaped the veterans who offered their remembrances. I’ve written here before that my experiences in Vietnam changed me permanently. It was comforting to see that other veteran writers are just like me, transformed forever by what happened in combat.

When Breath Becomes Air

Last night I finished reading Paul Kalanithi’s When Breath Becomes Air (Random House, 2016). It is the most moving book I’ve read in a decade.

Kalanithi was a neurosurgeon in his thirties when he was diagnosed with incurable lung cancer. He made two decisions: first, to write a book about his confrontation with and ultimate defeat by death; and second, to become a father. He did both.

He was a remarkable man in several senses. He was strong, dedicated, hard-working, and loving. But he was also profoundly educated in the arts and literature as well as being a master in his field. When Breath Becomes Air is beautifully written and organized, shaped with a sure hand and marked by courage and a search for meaning.

I concede that I was so taken with the book for two reasons divorced from the text. First, I’m still recovering from lung cancer myself—I was close to death. Second, I read the book over Memorial Day weekend when thoughts of death are foremost.

We Americans are odd in our cultural distancing of both sex and death. I discovered as a young man that other cultures are much more open and accepting than we are. I earnestly hope that Kalanithi’s work will help us to learn to perceive death as part of life. As for sex . . . we’ll see.

Poppies

I interrupt my exploration of No-Accounts and its origins to talk about Memorial Day, a holiday more important to me than any other in the calendar. As I’ve reported earlier in this blog, I spent many years in Vietnam providing signals intelligence support to U.S. combat units, both army and Marine, during the war. Men fighting by my side died as I watched. I’ll grieve for them as long as I live.

Yesterday I joined other members of the American Legion Post 156 (of which I m a proud member) offering poppies to passersby who contributed to the charities that the Legion supports.

Two observations:

First, I was impressed with the generosity of ordinary people. I always asked contributors if they were veterans. The answer was almost always no, but they said, in various ways, that they recognized that veterans had sacrificed so that citizens could enjoy the freedom and liberty of the American way of life.

How different it was when I and the troops returning from Vietnam were met by crowds who called us “baby killers” and “butchers” and spat on us. U.S. consciousness has changed, especially in the past few years. Veterans, even those of us from Vietnam, are now honored.

Second, I remembered why we use the poppy as a symbol of those of us who have died in war. The practice is inspired by a poem that came from World War I:

In Flanders Fields by John McCrae

In Flanders fields the poppies blow
Between the crosses, row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie
In Flanders fields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders fields.

Written May 3, 1915

The Compassion of AIDS Patients

As I said yesterday, the novel No-Accounts resulted from the five years I spent taking care of AIDS patients. Each of my seven patients was different from all the others. And yet, I found in all of them a kindness and generosity that surprised me. They didn’t fit my stereotype of gay men as self-centered and mean-spirited. They expressed concern for my welfare and went out of their way to thank me for the help I gave them. But mostly they had great empathy for other men suffering from AIDS.

In No-Accounts, I tell of the intervention of Peter, the principal gay character dying from AIDS, to stop his friend Billy from leaping to his death from the Calvert Street Bridge in Washington, D.C. after Billy is diagnosed. Billy is on the bridge railing. Peter stops Martin, his buddy, from approaching Billy. Peter knows Billy will let go if Martin gets too close. Instead, Peter, who’s too weak to pull Billy from the rail, grabbles himself on the rail and tells Billy if he lets go, Peter will, too. Peter leans forward as if to hurl himself from the rail. Billy, horrified, stops him and in the process falls back onto the pavement of the bridge. Peter has saved him.

I witnessed events like that several times with my patients. And their caring for others was a common trait among them all. I concluded that their closeness to their own deaths relieved them of the focus on the self that is so natural for us human beings and gave them the grace to put others first.

No-Accounts: How It Came To Be Written

I wrote yesterday about how I turned to helping others as a means of coping with my Post-Traumatic Stress from Vietnam.

But there was another reason I was drawn specifically to helping AIDS patients. When the epidemic first hit, the population was terrified of the disease. We didn’t know how it was transmitted. People, including health care professionals, were afraid to go anywhere near a person sick with AIDS. Landlords wouldn’t rent to them. Hospitals wouldn’t accept them. Some doctors and nurses refused treat them. The result was that there were literally men dying on the street because no one would take them in.

I watched what was happening, and I couldn’t tolerate it. I wanted to volunteer to take care of AIDS patients. I told my wife that there was an unknown likelihood that I’d contract the disease. If I did, she would, too. She told me to go ahead.

For the next five years I was a buddy to AIDS patients. I did everything for them because they could do nothing for themselves. I fed them, bathed them, dressed and undressed them. I was often the only human being caring for them. They were abandoned except for me.

I came to love every one of them. And when they died, I grieved.

In five years, I went through seven patients. They were all gay, and they all died.

Just at the time when I decided I couldn’t face another death, medical science isolated the means of transmission—bodily fluids—and discovered medicines that ameliorated the conditions brought on by the disease to the point that the death rate began to decline. I ceased being a buddy. I worked for several years with the homeless, then spent seven years caring for the dying in the hospice system.

But my experiences with the men who died of AIDS changed my life and outlook. The result was the novel No-Accounts.